Six minute read
By 2024, there are likely to be more than a million people living with dementia in the UK. Rosalie Kuyvenhoven is a funeral celebrant, researcher, Dementia Friend and a passionate advocate for making funerals more inclusive for people with dementia.
Here, Rosalie shares why it is so important for people living with dementia to be fully included in the funerals of the people they love and shares tips and ideas to create funerals that include everyone.
How did your interest in dementia-friendly funerals start?
About five years ago, as a celebrant, I met with a family who were planning a funeral for their dad. The family told me that their mum, who had dementia, would not be coming to the funeral. They were worried it would upset her too much or that she might behave inappropriately.
I respected their wishes, but it made me realise that I knew very little about dementia myself. My gut feeling was that people with dementia could be involved in funerals, but was that true?
There was so much more I wanted and needed to know about dementia in funeral-specific settings. I wondered about other celebrants and officiants. What did they know about it?
Did you manage to find the answers to your questions?
It was hard to find information. There were good resources from Cruse, Alzheimer's Society and Alzheimer's Scotland, but that was about it. So I thought, this a good opportunity for me to learn more!
Becoming a Dementia Friend was the obvious route to take. At the end of the one-hour training, you have to commit to an action. My action was to make the funeral world more dementia-friendly!
So how did you decide to play your part in making the funeral world more dementia-friendly?
Next, I trained as a Dementia Champion, which meant I could develop my own sessions to fill the gaps I had found and I became a member of the dementia alliance in my borough.
When I couldn’t find the information I needed, I did my own research. I developed an online questionnaire which I sent to funeral professionals and crematoria. I engaged with care homes. I interviewed all kinds of people. I found lots of good practice and tips and created this guide to dementia-friendly funerals.
Based on your research and your experience, what advice would you give someone who wants to make sure people with dementia are fully included in a funeral?
Above all, be led by the person who has dementia. There are so many different stages and forms of dementia. For example, people with early onset dementia can speak for themselves; if it’s advanced, they may need a carer or family member to speak for them.
Dementia is not just about memory loss. It affects all functions, including sight, hearing and responses. Each person with dementia is different and unique. Start with the person — what do or don’t they understand? What is the best way to approach them? What do they remember?
When talking, use short sentences, slow down, be prepared to repeat things and to check understanding. Use and watch body language. Tune into where that person is. Think about what they can do, not what they cannot.
You should always use clear language, explain that the person has died, not ‘fallen asleep’ or ‘gone on a journey’ as that can be confusing. Be gentle but honest, and ready to adapt in response to what that person needs.
If your starting point is to be led by the person with dementia and if everyone involved (funeral directors, officiants, crematoria) is led by them too, then a lot will be possible.
Any other practical tips?
It’s important for the environment to be as relaxed and comfortable as it can be. Crematoria and burial grounds are often good environments, they are green, spacious, there are flowers… but it’s still important to get familiar with the layout and logistics. Try to be early on the day and to visit the day before if you can.
Even if a person with dementia forgets the details, they can retain a sense of the environment and whether they had a positive experience there. The emotional experience stays longer than the facts. So surround them with positive ways to express the love they feel for the person who has died, rather than with sadness and grief.
Include elements in the funeral of ‘where they are’, the reality they are living in. For example, use photos, objects and music from the time that a couple got married, so that the bereaved person can make connections in a timeframe where they feel most comfortable.
Are there times when it’s not a good idea to involve a person with dementia in the funeral itself? If so, what alternatives are there?
It’s not always a good idea for someone with dementia to be involved in the formal part of the funeral. It can be extremely upsetting and intense if they forget that their loved one has died and then are reminded of it again at the funeral.
But there are different ways for them to remember, even if they do not attend the funeral itself. For example, playing a song or browsing through a book which is meaningful to them, in their own house or space.
What can we learn from dementia-friendly funerals to make funerals more inclusive for everyone?
A funeral which is dementia-friendly is more inclusive for other people too. The same principles apply when involving children or people of different abilities in a funeral, it’s about being guided by the person, and the results can be helpful for others too.
For example, using plain language rather than euphemisms or having clear crematorium signage benefits everyone, not just someone with dementia.
What do you have to be aware of, as a celebrant, when planning a funeral to make sure people with dementia are fully included?
Beforehand, I always check my script with the person and their family in case any words are likely to trigger upsetting responses. I’d like to remove potential distress, although you never totally know for sure. I also try and include anything that will trigger positive memories and responses.
Sometimes you have to be flexible and improvise a bit! In one funeral I took, where the widow of the person who died had dementia, she stood up and shouted ‘that’s about me and my husband’ while I was speaking.
It was lovely that she felt able to take the floor. Her children responded by saying, ‘oh mum, that’s amazing’ and I was able to say, ‘yes, he meant a lot to you’. It’s about validating what someone says, making it okay whatever they do and then gently bringing it back to the ceremony.
What are your hopes for the future?
My dream is that every funeral professional would be a Dementia Friend, or at least would understand a little bit more. It’s very easy: you can watch a five-minute video on the Dementia Friends website, or sign up for a 45-minute virtual session for more in-depth insights.
It isn’t rocket science — it’s simply about tuning into a person. There’s no one big sensational change that we need to see. It’s about investing time into being with people who live with dementia and adjusting services with that in mind.
It’s about a change of mindset so that, when families come, we can confidently make suggestions and help them to think creatively. I understand why there is a lack of confidence, but we must overcome this — including people with dementia can make all funerals more meaningful.
There’s still lots of work to do in providing compassionate, person-centred care for everyone, but there is a huge potential here to make a difference.
Check out our other blogs for more ideas and guidance. including how to plan a meaningful memorial and how to plan an eco-friendly funeral.
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